Friday, August 5, 2011

Communication Breakdown

     My husband's disorder can be such an all-encompassing thing sometimes. If I've said it once, I've said it a million times - there is no part of our lives that the Marfan's Syndrome does not affect. It influences what we do, what we don't do, what we might do and every damn thing in between. However hard I fight against it, I noticed that I've developed a tendency to overlook the immediate when trying to figure out what to do in the long term. By that, I don't mean that I necessarily ignore what's right in front of my face so much as I assign it lesser importance, something to be dealt with at a later date. And while this line of thinking is usually successful in tricking my head into thinking I've got more control of the situation than I actually do, it doesn't work so well for my husband.

     The thing is, I'm not what anyone would call a control freak. It's not like I have to know what's going on with every single part of my and my husband's lives at all times. I'm actually much bigger on taking things as they come and I believe that if one thing doesn't work out, then something after that will. I'll end up where I need/want to be and I while I may not know how I'm going to get there, I know with surety that I eventually will. I worry about getting my husband and I safely to that point, however. What if I make a decision that puts us in a worse spot than we are now? What if his health gets really bad, really fast? What then? Those are the types of big questions that keep me up at night.

     I had a conversation with my husband recently in which he told me that it really bothers him that I seem to ignore his concerns when they're on the level of things that I deem less important. Obviously, it's never been my intent to make him feel this way and I truly didn't think about what I was doing. In my head, trying to wrangle the larger problems, like how to get us set up so that he has the option to apply for SSDI if and (most likely) when it becomes necessary, was the best thing to do. I'm always trying to ease to burden of his disorder for him, because for so long, he didn't really have anyone to do that.

     Please don't misinterpret what I mean when I say he didn't have anyone to help take the load off - I don't mean that there was no one in his life that could/would help him out. The fact of the matter is, my husband spent most of his life living very much in-the-moment and not so much planning for the future. He didn't think about what his life would be like when the Marfan's really started wreaking havoc on his body and therefore didn't talk to anyone about it. How can you help someone when you don't know the amount of trouble they're in or, in this case, going to be in further on down the line? You can't, simple as that.

     And so, as I think about it, I realize that the problem here was really a communication breakdown on both sides. True, I was falling short in the area my husband most needed my support and reassurance - the immediate issues that pop up from time to time. Those are the ones that stress him out, the little trees that live on the edge of the forest. I think for him, the future is such a large, hazy idea with no defined edges that it's non-threatening and therefore isn't able to cause him stress. Since I'm the exact opposite, stressing out about the huge, looming uncertainty of our future, I never thought that maybe, just perhaps, he could be worried about something other than the things on my mind.

     When you're married to someone with a disorder like Marfan's, it's really easy to get wrapped up in everything you think you have to take care of in order to keep your lives running semi-smoothly. It's even easier to get stuck in the mindset of, "My God, I'm working overtime to get our affairs in order and keep them that way so that the next monkey wrench doesn't completely wreck us," so that you really believe you're doing all you can and them some to keep your husband happy. I mean, I'm researching new treatments, looking into what we have to do for SSDI, debating whether or not we should move closer to his parents, WHAT MORE DO YOU WANT FROM ME?!?! Except for, get off your high-horse, self!

     None of that justifies or even gives a good reason for completely missing this key piece of my husband's well-being. I have to pause sometimes and remember that while I get scared too, he's the one who's actually facing the doctors when they tell him there's really nothing more they can do. He's the one who has to sit on his hands and wait for things to break. It makes sense that it's the immediate that scares him the most, you know? He's always been someone who's thought in the right-now and why I didn't put two and two together before now is beyond me. I don't want to dwell on the why-didn't-I-see-the-problem part of it, though. I'd much prefer to take my new understanding of the situation and start working to make it better. Not sure how successful I'll be right off the bat, but here's hoping...

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